Productive Dr Apt Today, But Scary!

[Clairefmartin]

Well, I finally made it to a doctor who does autonomic testing! In the almost 10 years of having POTS, I have never had this done, and only in the last few moths have started working with Doctors that know anything about POTS/Dys and have all said, "we need to find out what's causing this". This is such a nice change to the normal local experience I have had for a decade - blank stares, and clueless frustration.

Anyways, I saw an endo who was VERY nice, his PA did a thorough history, and they did some quick orthostatics. My laying (with no resting) BP was 143/85 - which is WAY high for me, sitting was 134/80, then I had to lay back down because I felt like death, and then stood up and my BP was immediately 100/65. My pulse of course shyrocketed with each position change as well. The weird thing is, my BP is nromally low laying, then higher when I stand, then it crashes and I start passing out. Pulse always high when upright.

So I am getting a full autonomic work up, plus they are a few other things that they found during the exam and will be testing for - if anyone has any experience with these I'd appreciate some input, I'm pretty freaked out. I'm so used to being told everything is fine and I just have POTS, that getting this list of possible issues scares me.

1. Pretty sure I have mast cell issues going on (my allergist had previously thought this as well), but they want to check tyrptase, histamines, and possibly gastric pH.

2. discoloration on my knuckles and skin indicated cortisol issues, also checking ATCH

3. I've had issues with my right side of my face (I posted about it on here perviously), and in general my entire right side is weaker than my left (started after I had spinal surgery). They think I have "vascular flow issues" with my brain/face, and I need a new MRI. Also to check for a Chiari.

4. Thyriod (runs in my family, but I always test fine)

5. They want to double check all my echos for mitral valve prolase from other docs, even though it's never come up. They said my ejection rate was 60-65%??? I need to look up what that means.

6. They are doing loads of blood work to check for tumors on my pancreas and adrenals, and a neuroendocrine tumor? another one i need to look up.

7. Also checking again for Diabetes, I have hypoglyemic issues and they are concerned and want to know why. Again - I have been tested over and over for this, but they seemed concerned. Something about my skin issues was a sign of diabetes, I should have written it down!

8. Autoimmune testing - not ANA's, but other stuff, again - should have written it down!

9. Classic panic disorder (duh, I was so anxious about this exam)

So I'm pretty overwhelmed, but happy someone is doing something. I really liked this doctor and the staff, so I am actually still hopeful. I have major doctor let down baggage. I hope we can figure out whats going on! I have been homebound for over a year now and am ready to get some functionality back.

Any thoughts welcome. I may have just needed to vent. I came home and cried, I'm really freaked out all combined with being happy at forward movement in figuring out whats causing my POTS. I'm a hot mess! Minus the hot part

Thanks!

[roxie]

Aww, I think your reaction is completely normal. I went through it a few months ago when i first saw a really good dr after over a decade of being sick.  I cried a little bit during the appointment but when he left the room my mom said something and I started balling. The ugly cry where you can't catch your breath. Whenever I tried to talk about it for the next week or so i would cry.

Then during the autonomic testing I had this other dr who could tell I was totally panicked and kept saying "why are you nervous?" "you don't need to be nervous" and all i could think was, you have no idea what I have been through! But of course i couldn't tell him that because i would start crying and I wasn't about to do that in front of him.

The tests are going to be hard and overwhelming BUT HANG ON, this  to shall pass! It'll give them a better picture of what's going on and how to help you. 

Good luck

[sue1234]

Well, that does sound like a great doctor visit!! Good for you!

I can help you a little about neuroendocrine stuff. I have been tested a few times over the years.

You mention skin coloring. Normally for diabetics, you will see "acanthosis nigricans", which is a darkening of the skin. In diabetics, it usually occurs as a "dirty" appearance around the neck. I think the dark knuckles sound more like Addison's disease(low cortisol). I would assume that's why they mentioned the ACTH. If they find high cortisol in your testing, then they'll have to see if it is from a tumor on the adrenal gland causing it(high cortisol, low/normal ACTH) or if the pituitary gland has a tumor causing it(high cortisol, high ACTH).

Low blood sugar. They will see if it's related to really high blood sugars dropping, but it can also happen from an insulinoma of the pancreas putting out too much insulin. I had all the work-up for that. I definitely want to hear how they work you up for that one, as I want to compare notes.

[MomtoGiuliana]

The tests should help rule out anything that has not be caught that may be serious. It is a step in the right direction as you say! It's great they are being so thorough.

I would not put a lot of stock in any one single BP reading. Generally my drs say BP readings over a period of time are what are most useful. Maybe you were feeling anxious and that cause the high BP lying down that you do not usually get. Can you do some readings at home to share w your dr?

[bellgirl]

I was diagnosed with high blood pressure about 11 years before my dysautonomia diagnosis, and was on several meds for that. I also have a mitral valve prolapse. Actually, there are quite a few people that have mitral valve prolapses, and don't have our symptoms, but if they say it is at 65%, that means your blood is backwashing from your ventricle to your atria 35%. Backwashing is a normal occurence for us, and we have no more chance of having a heart attack than the average person, believe it or not, according to the literature, but of course it is what causes our blood pressure and heart rates to be all over the map!! Sounds like you have a wonderful doctor, and once they get you on the proper medications, you will be amazed the difference it makes. Don't worry about crying even in front of the doctor. After being home bound, it is a relief to finally be getting answers!! I know all about it. My neurologist saw me cry; it can be overwhelming at times. I was diagnosed with 3 things in 3 weeks! I am much better, but still have some bad days...you'll get through this...I promise; and we'll be here to support you, too!!

[HopeSprings]

This is one Dr. looking at all this stuff?? You found a good one. In order for me to get all that testing done, I had to go to multiple Dr's, tell my story over and over, and wait months in between all the different visits. Hope they figure it out! Keep us posted.

[potsgirl]

Claire,

I started off with my illnesses about 5 years ago, when I found out I had dilated cardiomyopathy and bradycardia. I had congestive heat failure, too. A normal ejection fraction is about 50-60%. Mine was 35% when Mayo Clinic did testing on me. Your ejection fraction can be lower than 50% and be okay if you're not having symptoms, but I was having major issues. Some people can have an EF of 20% and feel fine, while others can be at 45% and feel horrible. I received a pacemaker for my bradycardia, and went on Coreg and Coumadin for my heart problems, and I'm now off of both heart medications, although I still get echocardiograms every 6 months to check my heart - thankfully, this caught a blood clot I had in my heart about 9 months ago.

In my opinion, I think it's important that we don't just chalk up heart pain/problems as part of our dysautonomia without checking with a cardiologist first. I had the heart issues before I was diagnosed with autonomic neuropathy, along with other related symptoms.

[Clairefmartin]

Thank you everyone! Your posts were all so informative (as always!). ANd Naomi - I thought the same thing! This is Dr. Vinik - he used to be listed on the Dinet list, but isn't there anymore. I am so glad he saw me, they have an entire lab devoted to autonomic testing, and he really seems to know his stuff.

Potsgirl - He is working in conjunction with my EP, but they apparently saw some things that made them want to review all my echos just to double check, because my EP knows about POTS, but is a self professed "non-expert", which I appreciate, he is the one sending me to others he thinks can help more. And he reads all of Dr. Grubbs publications Oh and I had a clot in my heart as well! It was 2 cm in my right atrium, took 6 months to finally resolve. I'm down to a low dose of Lovanox because I'm not moving around much and I had so many DVTs and PEs, they don't want any repeats. Thats what really took me down during pregnancy and forced me to stay in bed and get this deconditioned, clots are the devil!

And Sue - thank you for the breakdown, I apparently do have that discoloration on my neck, and this doc specialized in diabetics dealing with autonomic issues, but my blood sugar is never over 140, so I'm a little confused as to why they are concerned about diabetes. I have gained a bunch of weight and am craving carbs (but I've been chalking it up to emotional eating - not leaving the house in a year makes GF brownies a small bit of heaven).

In reality, the thing that concerned me the most were the mention of tumors, diabetes, and the brain vascular flow issue. It would explain a lot though, and getting a Dx would be a relief.

I plan of having tissues handy at all times for the next few days. And I have to go get allergy prick testing on Friday, which I am nervous about...with me being so tachycardic, if I react and need epi - I get nervous about my heart rate. But they know all of that, and said its more important to breath - which I agree with!

[arizona girl]

Hi, I have metabolic syndrome/pcos and my glucose is rarely elevated. When it is it is usually a medication triggering it. That being said. You can have pre-diabetes if you are insullin resistant or hyperinsulinemic and it cause many problems like diabetes. Look up hyperinsulinemia, if you want more info. I have it and it is what caused the pcos/metabolic syndrome.

Your docs need to test your fasting insulin. Easy blood test. To dig in deeper they need to order a 3 hr glucose tolerance test and side by side insulin tolerance test. They need to be measured together.

My glucose was normal through out the test, but my insulin was grossly abnomal. The good news is that it can be treated with glucophage/glumetza, low glycemic diet and exercise. I can't get the excercise in but the glumetza, which is easier on the stomach, but more expensive has improved my blood work and I am loosing weight again. I also lost weight on glucophage.

Of course the discoloration as mentioned by others could also be adrenal, so get that test you said to make sure. I had it and it the gtt/itt or easy. They just take longer.

Good luck! I know it is scary waiting to hear, but it is also freeing and a relief to put a name to something you already know is wrong. After all you wouldn't be seeking medical care if you had no symptoms and you felt well. Knowlege gives you some sense that you have some power to control your circumstances, it is also validating when they finally diagnosis you.

[Chaos]

Glad you found a good doc. Hope they can get some answers for you!

You're ejection fraction of 60-65% looks normal. Usually 60-80% is considered normal. Glad he's being so thorough and looking at so many different aspects. I'm especially curious to hear if he finds a cause for your right sided weakness etc. I've had the same issue on the left side, but haven't had any luck finding a cause.

Similarly I have hypoglycemic issues but no diabetes or other cause has been found in my case. I always breath a sigh of relief when that one comes back clear as I REALLY don't want diabetes as a cause of my dysauto symptoms.

Hopefully you'll get some helpful info from all the testing. Something that really makes a big improvement in your life so that you can really enjoy your beautiful baby.

[Katybug]

Hi Claire,

Getting all the tests is like a roller coaster. Its normal to feel both hopeful and apprehensive about the results. I went through this earlier this year, when after 4 years of mystery, I started getting answers. It was scary at first. But, here's what I tell myself these days...Better the devil you know! It at least gives avenues of treatment and it can also allow you to deal with whatever emotions it brings. I believe the constant up and down of not knowing is both physically and emotionally unhealthy for us.

It is great that this doctor is trying to get to the bottom of this. Try to look at this as a way to move forward.

Katie

[janiedelite]

My mom has carcinoid syndrome, a neuroendocrine cancer, and Dr. Vinik has quite an excellent reputation for diagnosis and treatment in the neuroendocrine world. Congratulations on finding such a stellar doctor!

[sue1234]

Yep, Thankful, my local mentioned Dr. Vinik as one of the handful of doctors he might refer me to when I had that high VIP level and possible carcinoid. I had already been aware of his name after years of being a part of various endocrine forums. He does have a good reputation! I am waiting to hear all about what testing he does on you, Claire.

[Clairefmartin]

PS - the doc also said my pupils were not dilating. Any thoughts on this?

I have all my testing scheduled a week from now, including a new MRI to compare contrast vs non- contrast (and contrast makes me sick!) to see blood flow to my brain. I'm freaked. Then I have to wait until Feb16th to get results or next steps. I'm assuming if something is really really wrong, they'll let me know sooner? You'd think I'd be a pro after almost 10 years of this - but I'm freaked!

[jackiemxoxo]

I go to Dr. Vinik as well! You are in good hands because he thoroughly checks out everything. My case was especially tough because he said he had never seen dysautonomia as severe as mine when I first got sick two years ago. Luckily, I have been doing much better and he thinks mine was a neurotropic virus but is still investigating other issues. I like Dr. Vinik because he is careful about which medications to use and how they work. You will probably end up doing the Cannes test which is a breathing test which measures your valsalva maneuver and heart rate which is simple. My pupils are very sluggish as well. All the test I have taken there are non-invasive. I now see him about every 6 months which is helpful. Remember to checkup on your results though especially if you start feeling sicker because they are not always that prompt at getting them back to you (Just being honest). But yeah, I think you are on the right track to getting some answers which is good.

[Clairefmartin]

I go to Dr. Vinik as well! You are in good hands because he thoroughly checks out everything. My case was especially tough because he said he had never seen dysautonomia as severe as mine when I first got sick two years ago. Luckily, I have been doing much better and he thinks mine was a neurotropic virus but is still investigating other issues. I like Dr. Vinik because he is careful about which medications to use and how they work. You will probably end up doing the Cannes test which is a breathing test which measures your valsalva maneuver and heart rate which is simple. My pupils are very sluggish as well. All the test I have taken there are non-invasive. I now see him about every 6 months which is helpful. Remember to checkup on your results though especially if you start feeling sicker because they are not always that prompt at getting them back to you (Just being honest). But yeah, I think you are on the right track to getting some answers which is good.

Wow that is great to hear! Are you local in Hampton Roads?? I have yet to meet/connect with anyone with POTS around here. I REALLY liked him, and was wondering if he diagnosed your Autonomic Neuropathy? I think I have either that or Small Fiber Neuropathy, and thought I would need to see a neurologist for this, but if he can do it, that'd be great! I've had no luck with Neuro's here, had to go to UVA, and even that was kind of a wasted trip.

Thanks!

[anaphylaxing]

So glad they're being thorough!! Make sure if you can that they are doing a urine N-methylhistmaine and prostaglandin D2 for the mast cell markers. I hope they find answers and a way to treat you better.

I would think if they meant ejection fraction on your echo that that is in the normal range. But glad they're checking for MVP; I think I might have that too, but echo's been normal so far

I would be worried about the contrast too and would consider premedicating; though gadolinium is supposedly safer than CT contrast. I just know that when they even inject saline I react from just the disturbance I think....